Hope has been on my mind.
Hope has been a part of my family for a long time. I hold vivid memories of days in college when my mother and I cared for her father, my grandfather, as he died, and took turns reading Jane Goodall’s ‘Reason For Hope’ out loud to him, and to each other, as we sat by his bedside. At the time my mother was in the midst of her own cancer treatment and I remember listening to her read about the earth’s evolutionary inclinations toward hope and thinking that I’d be proud to have her strength someday. And so the next year when my mother was given her second cancer diagnosis, only two and a half years after the first and this time terminal, our family was easily anchored by her words of intention that shaped her living before she died: “bold hope.”
But hope is also a concept I’ve been finding at the forefront of my research, as well. I think this can at times surprise people, who often ask if my work around child death and dying is just all sadness all the time.
Much of the first few months of my PhD programme is about preparation: logistical, intellectual, physical, emotional preparation for defending your ideas, for collecting data, for this grand and bizarre undertaking called a doctorate, for the clarity to rest in knowing all you don’t know, for the mental fortitude to finish the task. Each student’s research requires its own particular preparations and much of mine have been focused on the risk assessments, ethical approvals, and methodologies associated with traveling to Kenya to conduct research for a year. And reading. I am forever reading. But among all the forms and reports and presentations, there’s another preparation I’ve been quietly undertaking as well.
I see what lies ahead, asking the parents of children who have died from cancer to narrate what happened as their child died, to put into words the space between their child’s life and death, and I feel such a tremendous responsibility around that. I am stepping into holding families’ most intimate and vulnerable stories. I see that as an honour, and one that I take very seriously. And one part of taking that seriously, for me, is a commitment to hold space for hope, in whatever shape it may take and whatever time it may arise or dissipate. In anthropological methodological terms, I’m committing to a desire-based framework, which Eve Tuck describes as “documenting not only the painful elements of social realities but also the wisdom and hope…so that people are seen as more than broken and conquered.”[i] This is not a matter of asking for people’s magic wand wishes and what-ifs, nor is it an act of denying what suffering may exist and the powerful forces beyond control that might cause them pain or keep their ease out of reach. This is a matter of honouring the reality of loss as well the possibility that something else could exist, too.
You may be thinking that it is irresponsible to encourage parents of children with terminal illness to hold hope, that it is foolish to imagine that parents whose child has died might maintain hope. You may be thinking that it was naive of my mother and our family to live so fully into hope, to choose life when death was certainly before us. I imagine this comes from a view of hope as equivalent to optimism, to looking on the bright side, or to wishing fervently for a perfect reality. Or maybe it comes from a view of hope, in the context of illness, as a fervent belief that the road will only lead to a cure. Or a view of hope as in contrast to giving up, where giving up is understood as what occurs when one ‘lets’ illnesses take their physical course, when one stops intervening in the inevitable. Or a view of hope as an unrelenting sight of things as different than they are.
If you operate with this view of hope, you might think it’s nowhere to be found in my work. That a child’s death is a demonstration of hope failing. That a bereaved parent is likely the least hope-full individual. That it is ill-advised, impossible, or potentially even unethical to think that hope could exist for families as their child dies, or even after they have gone. That to suggest the possibility of hope is to deny, resist, or refuse to accept death. That hoping is clinging to a false reality. That families would be better off to face the truth.
The other week I attended a conference on paediatric palliative oncology, where over 2,500 people from around the world gathered out of a desire to ease suffering and affirm life. One session on realism and hope discussed how to navigate situations where families continue to yearn for a cure for their child’s cancer in the midst of very poor prognosis and included a discussion of how bereaved parents define hope in their own terms.
One parent said:
“Hope is the antithesis of despair, not reality.”
Another said:
“To be hopeful is a function of the heart and a decision of will, to be realistic is merely a function of understanding the most likely outcome.”[ii]
In the final year of my mother’s life, when every additional day began to feel like an extra, unexpected gift on the road to where we knew we were headed, her words of intention were ‘choose life’. Though different in terminology from ‘bold hope’, I’ve grown to see the two as nearly identical as, I think, these bereaved parents might as well. In fact, there’s a version of this essay about my work in children’s hospice that I’ve had in drafts for years now titled “I can see a lot of life in you.” For my mother and for our family, choosing life had nothing to do with denying death or avoiding the likely outcome, though we were also not a family that spent much time dwelling in the odds. It wasn’t about refusing sadness or there never being a difficult day, but, for us, about keeping close to the reality that trees shed their leaves in autumn but continue living through winters and grow again, though not the same, in spring.
There’s an essay and subsequent collection by Rebecca Solnit titled Hope In The Dark, based off the Virginia Woolf quote “the future is dark, which is the best thing the future can be, I think.” I wrote those words and drew ginkgo leaves onto cards and mailed them to friends at the start of the pandemic last year. It’s a quote that challenges me, pushes me to think beyond the limits of custom, asks of me my imagination. And for me, that’s what hope is: a conscious, sometimes wonderfully easy, sometimes deliberate and hard and scary, choice to find stillness in uncertainty, to hold dear the possibility that the dark unknown holds equal possibility for light, to ask yourself repeatedly to stay open, and vulnerable, to being caught by surprise and delight in life emerging, continuing. Even, as Eve Tuck writes, to grant permission for the desire of “the not yet and, at times, the not anymore,” [iii] without an assumption that this requires a denial of what is.
A friend, whose family has also known serious illness, and I have for many years traded musings on what it means for us to hold fast to hope in the midst of changing realities. I think it’s been important to know there is someone who will afford us space to hold multiplicities, to exist outside the binaries of blind optimism or despair. And so with all those with whom I am in relationship, walking through any reality, I work to hold space for the possibility of their hope, for the ‘yes, and’, for being dazzled by the sunlight even in those most raw, human experiences and moments. Especially in those.
To me then, holding open space for hope and committing to a desire-based framework in my research is about creating the opportunity for families to define their own complexity and to be more than just all sadness all the time, to be in reality and also not reduced as singularly in despair, to have desires that are also fiercely grounded in what is. In practical terms, that means establishing, and never taking for granted, trust with families. It means setting the physical and material conditions for them to feel safe and secure to tell their stories. It means establishing boundaries and mechanisms for them to be in control of the telling, with the assurance that it will be treated with dignity and respect. But it’s also about creating the space within myself to be sure I’m able to listen to their hope, and to honour it, no matter how it manifests. It’s about being fiercely honest with myself about my own assumptions about what it is to lose a child, about where hope could and could not be and what shape it can and cannot take. To, as Kathy Charmaz has written and as is taped to my laptop as a daily reminder, maintain “the willingness to doubt one’s convenient explanations”[iv] as I take in their narrations. And to then retell and represent the multiplicity of what is true for them, in their terms, with the utmost care.
Some might roll their eyes, say I’m spouting hippie fluff. Maybe. But for me at least, as someone living with loss, I find it actually to be among the most serious of undertakings, to remain hopeful, to listen for hope, to resist the urge to let simplicity take over.
In fact, in recent days, I’ve struggled to keep my own hope muscle strong as I wrestle with the sentencing of Derek Chauvin and the release of Bill Cosby. I’ve committed myself to questioning and imagining within an abolitionist framework, which understands that prisons, policing, and our carceral punishment system will not create lasting and liberating change in our societies. And so in the last weeks my difficulty in holding fast to hope for a more just world where Black men get to grow old and women’s bodies are their own has not exactly been tied to an anger over prison time or a belief that the current criminal legal system holds the means of freedom from oppression. And so regardless of the carceral outcome in either case, the future has felt dark, as I watch as men who hold power, through various means, are able to harm without remorse and we as a society do not respond to their wrongdoings with meaningful change. Even in the midst of writing about my preparations to hold myself open to the honour of receiving the hope that may exist within bereaved families in Kenya, I have found myself struggling to make my own conscious choice to hold fast. Which is to say that hope is not a flashy declaration that never wanes, nor is it an immoveable stance or a matter of taping up an inspirational quote poster on the wall and walking away. In the face of loss, pain, oppression, and injustice, it is not a matter of definitively concluding that you will never falter on the life-affirming path to the future or that you cannot at times long for a reality that is not yet or no more. It is, as another bereaved parent in the study said, “not about outcome, it is about the fight.”[v]
And so my research preparations are about the daily practice of conditioning my own fighting, muscular hope, and of asking myself, repeatedly, to keep open to that of others. And it is in these moments that I find myself in awe of the gorgeous responsibility my research entails, of the depths to which it teaches me, and of how much more it is than just all sadness.
[i] Tuck, Eve. ‘Suspending Damage: A Letter to Communities’. Harvard Educational Review 79, no. 3 (1 September 2009): 409–28. https://doi.org/10.17763/haer.79.3.n0016675661t3n15.
[ii] Kaye, Erica C., Ashley Kiefer, Lindsay Blazin, Holly Spraker-Perlman, Lisa Clark, Justin N. Baker, and On Behalf of the St Jude Quality of Life Steering Council. ‘Bereaved Parents, Hope, and Realism’. Pediatrics 145, no. 5 (1 May 2020). https://doi.org/10.1542/peds.2019-2771.
[iii] Tuck, Eve. ‘Suspending Damage: A Letter to Communities’. Harvard Educational Review 79, no. 3 (1 September 2009): 409–28. https://doi.org/10.17763/haer.79.3.n0016675661t3n15.
[iv] Charmaz, Kathy. ‘“With Constructivist Grounded Theory You Can’t Hide”: Social Justice Research and Critical Inquiry in the Public Sphere’. Qualitative Inquiry 26, no. 2 (February 2020): 165–76. https://doi.org/10.1177/1077800419879081.
[v] Kaye, Erica C., Ashley Kiefer, Lindsay Blazin, Holly Spraker-Perlman, Lisa Clark, Justin N. Baker, and On Behalf of the St Jude Quality of Life Steering Council. ‘Bereaved Parents, Hope, and Realism’. Pediatrics 145, no. 5 (1 May 2020). https://doi.org/10.1542/peds.2019-2771.
callie daniels-howell 